by Leo King

NHS care records go live with serious data concerns

Nov 15, 2009
GovernmentIT Strategy

The NHS has said it will accelerate and complete the rollout of summary care records (SCR) over the next year, reigniting doctors’ concerns over the information in the records and whether patients understand the implications.

SCRs are intended to provide clinicians in hospitals and out of hours care with basic information on patients’ medications and drugs, in order to enable safe and effective care. Many doctors have welcomed the SCRs in principle, but their use in practice has been controversial.

Concerns raised

Automatic opt-in of patients

People’s understanding of what it means

Security and access control

Accuracy of data on the record

Presentation of data according to clinicians’ needs

Control of data added over time

The records will be in place across the country by the end of 2010, the government said, even though last year a powerful parliamentary committee examining the scheme questioned the likelihood of that being possible.

The NHS also reiterated that patients will be automatically opted-in to the scheme, unless they request not to have their details stored. They can do this by replying within 12 weeks to an information letter they receive in the post.

The controversial rollout of SCRs has already taken place in six pilot areas, Bolton, Bury, Bradford, Dorset, South West Essex and South Birmingham. An official study of some pilots highlighted concerns that many did not receive the information letter, and of those who received it, a significant number failed to understand what it meant, and were set to be automatically opted in.

The national rollout of summary care is now taking place, with London’s first SCRs being uploaded. The NHS has decided to include patients’ end-of-life care wishes on the records, including where they would like to die if terminally ill, a change that was welcomed by several charities.

But doctors’ professional body the British Medical Association today told CIO sister title Computerworld UK that it was not at all convinced that it was right to automatically opt in patients to SCRs.

“The policy simply has to be that patients choose to opt in if they want,” a spokesperson said. “Patients need to be treated like adults where they make a conscious decision to be a part of it or not to be a part of it.”

Last year the NHS introduced a ‘consent-to-view’ model, whereby patients have to authorise any viewing of their record. But the record is still automatically uploaded unless they opt out.

That model was “an improvement, but not enough”, the BMA said.

Doctors also argued today that they needed much more clarity on what will be stored on the SCR and in what format, so that it can be made useful.

“We understand about there initially being information on patient allergies and drugs,” said Dr Grant Ingrams, a GP in Coventry who is on the NHS IT working group at the BMA. “But we would prefer more clarity on the second phase of information being added.”

Under that phase, he said, the NHS plans to add hospital discharge letters and consultation reports to the SCRs. The BMA has said it will take time to see whether the information added and the format is useful.

“What we don’t want is a big file of documents that you’re not sure who they’re from or what they’re about, because that makes life difficult, and also opens you up to a legal challenge where you might have missed some buried information,” said Dr Ingrams.

“It’s got to be in a standard order and searchable. But they haven’t got that far in deciding that.”

Dr Mary Hawking, a GP in Bedfordshire who has in the past been critical of the way the programme has been managed, said she too was concerned about the “mission creep” of other documents and records being added to the SCRs.

“The danger is that while information on allergies and medication is useful, you can upload all sorts of rubbish along the way, things that patients didn’t want on there,” she said.

“Suppose you have a mental health problem, or were abused as a child. You don’t necessarily want information freely out there when you’re admitted to A&E for an unrelated accident.”

There were also “many issues” over data quality, with many surgeries not having accredited data, she said. In March, the NHS ended the need for data accreditation.

Helen Wilkinson, a former employee of the NHS and founder of the Big Opt Out Campaign, agreed that the concerns over data quality were “huge” and that the lack of accreditation of many GP surgeries was a worry.

“I started the campaign after discovering that thanks to a coding error I’d been wrongly labelled on the system as an alcoholic,” she said. “My MP had to get a debate in parliament to have the record changed.”

“Now I get patients in early adopter sites, and GP surgeries, ringing me. Because many don’t know what the programme’s about.”

Asked whether it would be useful to have a standard national framework setting exactly what can be uploaded and in what format, Dr Hawking said it would. “Look at the Welsh programme,” she said. “They made it completely clear there are to be no uploads on mental health and sexual health.”

“The big problem is that as a patient, if you don’t opt out, you’re automatically consenting to all sorts of information beng added in the future, and we don’t know what it is or the quality of it.”

Dr Hawking called for the NHS to have “more discussion” with GPs and patients, and “less going ahead without their engagement”.

The NHStoday insisted that the SCRs in early adopter areas were demonstrably improving care, and defended the continued automatic opt-in of patients.

“An opt-in model is likely to disadvantage those elderly or chronically ill who do not take the initiative to ask for a Summary Care Record,” it said. “This would mean that those most likely to benefit from clinicians being able to access key information in unscheduled care situations are less likely to have this improvement in their patient care.”

Health minister Mike O’Brien added: “Having the right information at the right time can make all the difference to patients’ experience of urgent care.”